Some information in the article below is not accurate. My notes are in red below the paragraphs.

Click on image for larger version.

Saturday April 5, 2008
Treated lightly
By SHOBA MANO

Fifty years into Merdeka, and the disabled are still fighting social prejudice in order to live independently.

A disabled person is usually confined to the home or cared for by family members. Some are sent to live in institutions or private nursing homes.

With these limited options, the disabled can hardly lead a fulfilling life, and do all the things that the able-bodied take for granted.

Hence, to improve their quality of life, the Independent Living Movement began in the US, starting with the Center for Independent Living in Berkley, California in the late 1960s.
The amended Street Drainage and Building Act specifies the gradient of ramps, but this one is just too steep. — SHOBA MANO

From there, the movement spread to Asia and flourished in Japan, where a government agency called the Japan International Cooperation Agency (Jica) began helping other Asian countries to implement Independent Living (IL) for the disabled.

Between 2005 and 2007, Jica worked with the Social Welfare Department in Malaysia to organise IL workshops and seminars in Kuala Lumpur. They trained at least 60 peer counsellors to provide emotional, relational, information and job-related support to other disabled.

However, most of these peer counsellors are unable to provide their services on a fulltime basis due to the lack of funding.

Peter Tan, 42, is one such peer counsellor. But thanks to a grant from Toyota Foundation of Japan, he operates the Independent Living Centre (ILC) in Kuala Lumpur on an ad hoc basis.

This ILC is one of two in Malaysia. The other is in Petaling Jaya. Unlike in Japan, the Malaysian government does not provide them with an annual grant, and hence, these peer counsellors only provide their services when they are free to do so.

“By comparison, Japan currently has 60 ILCs under the auspices of the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JCIL),” said Tan.

The acronym for the Japan Council on Independent Living Centers is JIL. It represents more than 200 Independent Living Centres in Japan. The National Council on Independent Living (NCIL) is based in the USA and has more than 400 Independent Living Centres under its wing. Both are independent of each other but are part of the Global Independent Living Network that was established recently after the Global Independent Living Summit (GSIL) in Korea that ran parallel with the 7th World Assembly of Disabled Peoples International (DPI).

These organisations receive annual grants from the Japanese Government, so that the ILCs can employ full-time personal assistants to help the disabled with daily activities.

Personal assistants in Japan earn salaries equal to those of fresh university graduates. They are also selected from a pool, so even if one or more of them go on leave, there will still be others to care for the disabled.

The Japanese ILCs also provide job opportunities by hiring the disabled as clerical and administrative staff.

Tan said the biggest problem faced by the disabled regarding independent living was not their physical limitations.

“Our biggest problem is social prejudice. When society treats us as if we don’t exist, and don’t consider our disabilities when designing access to public transport, buildings and offices, then we are forced into isolation.

“This is when the futility of life sets in, and we become depressed,” he said.

Tan said under the standard set by Jica, IL was defined as having equal opportunities and access to education, jobs, mobility and all other basic rights enjoyed by the able-bodied.

The standards mentioned above were not set by JICA but are included as part and parcel of the rights-based advocacy of the Independent Living Movement. There are four key concepts of Independent Living that were promulgated by Ed Roberts, the father of the Independent Living Movement. These concepts are adhered to by many Independent Living Centres worldwide. They are as follows:

1. People with disabilities should live in their communities instead of staying in institutions.
2. People with disabilities are neither patients to be cared for, children to be protected, nor God to be worshipped.
3. People with disabilities themselves can identify the necessary assistance required and manage it.
4. People with disabilities are the victims of social prejudice rather than the victims of disabilities.

The criterias for accredited Independent Living Centres are set by the Independent Living Councils of the respective countries. These Independent Living Councils employ similar criterias:

1. 51% of the board members must be disabled persons where the chairman and other key members must also be disabled persons
2. The Centre must be non-residential
3. The Centre must provide core services - peer counseling, personal assistant service, Independent Living Skills training, social advocacy and referral services on housing and welfare

The Uniform Building (Amendment) Bylaws 1991 of the Street Drainage and Building Act 1974 provides clear guidelines for the disabled to have access to public buildings and even specifies the gradient for ramps.

“But even modern buildings do not adhere to the law. So whatever ramp they have is useless to the disabled as the gradient is too steep and can cause a wheelchair to tip backwards.”

For public transport, only the Putra LRT is accessible, while the STAR and Monorail services are still inaccessible to the disabled,” said Tan.

“Even feeder buses do not have disabled-friendly facilities, although some of them do have ramps. The problem is that when they are let down, these ramps do not align correctly to the curb and can cause a disabled person to fall off his wheelchair.”

N. Surendran, the legal advisor to Malaysians against Death Penalty and Torture (Madpet), an organisation dedicated to fighting for the rights of the disabled and animals, among others, said social prejudice had much broader implications in Malaysia.

“Social prejudice is not just confined to the disabled, but extends to animals too and that is why very few among the disabled community have pets.

“The blind and those in wheelchairs, for instance, can be far more independent if they were encouraged to have trained guide dogs to take them around. With guide dogs and service dogs that are trained for other disabilities, even the reliance on personal assistants will be reduced.

“But these dogs are not allowed in public places in Malaysia, unlike overseas where the disabled can take them everywhere they go,” he said

Surendran urged the government to provide funding for ILCs and support the medical and food bills of dogs and other pets, due to the therapeutic effect they have on humans.

He said with government funding, Madpet can even help to train dogs for the disabled.

“This will result in more dogs, cats and other animals being adopted from shelters as well, so it’s a win-win situation for humans and animals,” he said.

Surendran also complained that the proposed Persons with Disability Act, which was drafted in 2002, has yet to be tabled in Parliament.

“I’m also unable to obtain a copy of the Bill to check for any omissions. NGOs and others with experience in helping the disabled ought to have been consulted before the Bill was drafted, but this did not happen either,” he said.

o To learn more about independent living visit http://cilpenang.org/category/independent-living

After two days of trying to get a good shot, I finally managed to take several decent images of one of the non-step buses with its ramp deployed. When picking up or dropping off passengers in wheelchairs, the height of the bus is lowered. The entrance/exit side is then “kneeled” to match the height of the kerb and the ramp is deployed. A wheelchair user can then get into the bus with little effort.

We arrived at KINTEX early again. With time in hand, I decided to explore the vast ground outside the complex. When I say vast, it really is. I was also pleasantly surprised by the abundance of accessible parking at the car park. I was in for another pleasant surprise when I caught sight of Ai-Chan getting off one of the shuttle buses. She was scheduled to speak in one of the workshops on that day.

The day passed quickly as I attended one workshop to another. In between, that, I managed to squeeze some time to visit a few of the activities organised on the sidelines to keep delegates entertained while they are not attending any of the workshops. There were clowns sculpting balloons, caricature artists and day tours to the DMZ and other places of interests around Seoul.

The day did not end at the conclusion of all the workshops for the day. Many of us stayed back to attend the Global Summit on Independent Living. Among the highlight of the Summit was the unanimous support by all the delegates present to the proposal by Shoji Nakanishi to establish the Global Independent Living Network. He had earlier this year established the Asia-Pacific Network in Independent Living Centres (APNIL).

I was also one of the speakers at the Summit on IL in Asia-Pacific presenting the development of the Independent Living Movement in Malaysia similar to the presentation I did the day before. My fellow speakers were Udomchok Churut from Thailand, Muhammad Shafiq-ur-Rehman from Pakistan, Abner Manlapaz from the Philippines and Ko Kwan-Chul from Korea.

Although I have conducted trainings and spoke in many seminars on Independent Living, I was as nervous as a long-tailed cat in a room full of rocking chairs. Before me were my peers who have experience working in the movement for decades. Compared to them, the two years of my involvement made me feel like a kid on his first day of school. I am grateful for Shoji Nakanishi for giving me the opportunity to address such an esteemed audience.

The last event was a cake cutting ceremony to celebrate the successful conclusion of the Summit where all delegates grouped together before the stage as a sing of solidarity. Sitting there on the stage watching camera flashes going off in all direction and the seeming chaotic celebration of so many disabled persons gave me a sense of hope that we can accomplish great things if we put our hearts to it.

Non-step bus with the ramp deployed.

Boarding the non-step bus in my wheelchair.

KINTEX.

KINTEX.

KINTEX.

Accessible parking at KINTEX.

Aiko Tsutsumi, Peter Tan, Hiroaki Furihata and an unknown person outside KINTEX.

Peter Tan at KINTEX.

Jung Woon-dae of Ablenews and Peter Tan at KINTEX.

Jung Woon-dae of Ablenews, Hiroko Fujimoto and Peter Tan at KINTEX.

Disability Film Screening during the 7th DPI World Assembly.

Posing with the caricature artist. Unfortunately I misplaced the caricature.

What I had for lunch everyday - low-protein meal Korean-style.

Dr. Glen White giving a presentation on the management of Independent Living Centres.

Speaking at the Global Summit on Independent Living.

Celebrating the conclusion of a successful Global Summit on Independent Living.

INTRODUCTION

Independent Living (IL) is still at its infancy stages in Malaysia although it was introduced in Malaysia in 1999. Disabled people are still marginalised in all areas of their lives including education, employment and social support services.

OVERVIEW

This paper looks at the situation of disabled people, history of IL and the challenges of implementing IL in Malaysia.

QUICK FACTS

Malaysia has a population of 27.17 million people. A total of 197,519 disabled people have registered with the Department of Social Welfare Malaysia (DSW) at the end of 2006. This figure is not a true reflection of the number of disabled people as registration is voluntary. At the moment there is no anti-discrimination law. A proposed Persons with Disability Act drafted in 2002 has not been sent to the Parliament yet.

1 SITUATION OF DISABLED PEOPLE

1.1 Prevalence of Medical Model of Disability

The medical model of disability is deeply entrenched in the mindset of Malaysians. Disability is viewed as other people’s problems rather than the collective problem of society. There is a strong prejudice towards disability and disabled people. The general perception is that people are disabled by their conditions rather than by structural and attitudinal barriers.

1.2 Institutionalisation of People with Severe Disabilities

People with severe disabilities are mostly cared for at home by family members or by a domestic helper employed by the family. Other options include staying in institutions for disabled people or private nursing homes for the elderly.

Many of the institutions double up as training centres to provide vocational skills to residents for them to earn a living. Emphasis is placed on financial independence. This propagates the misconception that the ability to earn a living is the key to independence.

The DSW is giving out an allowance of RM200 (USD60) per month to disabled persons who are working and getting a monthly salary of below RM750 (USD215). Those who do no work are not entitled to this allowance.

Private nursing homes for the elderly are profit-oriented. They will accept anybody as long as the monthly charges are paid promptly. These homes are run like institutions where the daily routines of residents are regimented.

These options leave very little room for disabled people to assert their right to live independently. They have limited or no control over what they want to do. They do not have much say in how they want to live their lives. Dignity and self-determination are surrendered just to have a place to stay and be cared for.

1.3 Moving Towards Social Model of Disability

There is an urgent need to implement measures to advocate for the self-determination of disabled persons in Malaysia. Through the initiative of Japan International Cooperation Agency (JICA) and the DSW, a series of seminars and workshops were organised to empower disabled persons. These colloquiums have sowed the seeds of Social Model of Disability not only in disabled people but in officers at the DSW. This is a good move as welfare officers are now able to empathise better with the challenges faced by disabled people.

2 IL MOVEMENT IN MALAYSIA

2.1 History of Independent Living

The first IL Workshop in Malaysia was conducted in Kuala Lumpur from August 28 - 30, 1999 by a peer counsellor from the Human Care Association of Japan. This workshop was organized by a group of disabled leaders in Malaysia in close coordination with the Asia Disability Institute. 14 participants attended. Following that workshop, the IL Programme manual was translated into the Malay language.

From 2005 to July 2007, the DSW and JICA have organised one IL Workshop and Seminar and two Peer Counselling Workshops in Kuala Lumpur respectively. These trainings were all conducted by peer counsellors from the Human Care Association and assisted by local resource persons. To date about 60 disabled persons have been trained on IL and peer counselling in these courses.

Several one-day IL seminars have been held in various states outside Kuala Lumpur, namely in Penang, Perak and Johor by peer counsellors from the Human Care Association and Malaysia. IL workshops and peer counselling courses are also conducted by individual organisations working on IL projects for their members. Peer counsellors have been visiting hospital rehabilitation units to share the concepts of IL to newly disabled people and provide information support services provided by the government.

Recently, the IL Programme Manual was translated into Chinese. IL and Peer Counselling video have also been translated into Malay, English and Chinese in a project funded by JICA. These translated versions are important as Malaysia is multi-ethnic country of Malays, Chinese and Indians. Materials in different languages give a better understanding of the contents.

In 2005 and 2006 respectively, the DSW and JICA organised Training the Trainers Workshop on Disability Equality Training (DET). This was to familiarise leaders of the IL movement in using various methods to advocate for the removal of structural and attitudinal barriers.

2.2 Advocacy

Since 2006, there has been an increase in high-profile advocacy activities on disability issues. These include advocacy on accessibility in the built-environment and public transport, and a call to the government to expedite the passing of the Persons with Disabilities Bill in the Parliament to remove discrimination and protect the rights of disabled people in Malaysia.

2.3 IL Centres

The support extended by JICA and the Human Care Association since 2005 in organising trainings for disabled leaders coupled with the current advocacy activities have created a greater awareness among disabled people on their rights and the concepts of Independent Living. The time is ripe now for the establishment of IL Centres in Malaysia.

Currently IL-based activities are being conducted by organisations on an ad-hoc basis as there are no IL Centres in Malaysia that adheres to the principles similar to those set by the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JIL).

Nevertheless, by the end of 2007 two Independent Living Centres will be officially set up in Malaysia based on established IL Centre principles. One is in Kuala Lumpur and the other in Petaling Jaya, a city next to Kuala Lumpur.

3 CHALLENGES OF THE IL MOVEMENT

3.1 Reservations Regarding IL

IL is a relatively new concept in Malaysia. As with all things new, doubts and fear of the unknown arises. There is a need to disseminate more information to target groups.

3.2 Funding of IL Centres and IL-Related Services

At the moment, the government does not provide grants for the running of IL Centres or for personal assistant services. IL Centres have to look for alternative sources of funding.

3.3 Peer Counsellors

Malaysia is not lacking in peer counsellors and resource persons on IL. About 60 persons have been trained since 2005. However, most are working in full-time jobs not related to IL. Financial independence is still seen as the only way to achieve independent living. There is a need to have peer counsellors working fulltime in IL Centres.

3.4 Personal Assistant Service

It is thought that with financial independence, carers can be employed to act as personal assistants. These carers are brought into Malaysia as domestic helpers and have two-year contracts. Some leave after their contract expires while others renew the contract for a few more terms.

The cost of employing domestic helpers is escalating. Many prefer to work in countries such as Singapore, Hong Kong and the Middle East where the salary is higher.

Unlike IL Centres which have a pool of personal assistants, there is only one domestic helper for one disabled person for the entire two-year duration. If the domestic helper is unable to work for any reason, the disabled person will be stranded. There is a need to build teams of local personal assistants to ensure continuity of service.

4 FUTURE DIRECTION

Subsequent to the setting up of the two Independent Living Centres, an umbrella body of IL Centres Council similar to that of the Japan Council on Independent Living Centres (JIL) will be formed to regulate the standards of Independent Living Centres. There are also plans to set up two more IL Centres within the next three years. One will be in Penang in the north and the other in Johor in the south.

To ensure the sustainability of these Independent Living Centres, it is essential to get support and funding from the government. It is also vital to get the government to provide funding for personal assistant service. To this end, Independent Living Centres and the Council have to actively engage the government and push for the recognition of IL as the fundamental human right of disabled people to live independently in the community with full support from the government.

CONCLUSION

This is an exciting time for disabled people in Malaysia. The country aspires to become a developed nation by 2020. The government is working on building human capital to power this aspiration. Disabled people in Malaysia would like to see the phrase “human capital” to include disabled people too. Recent high-profile advocacy activities have made the government aware of the problems faced by disabled people. In a way, we have created a demand and the government has no choice but to supply.

Disabled people too have to keep up with the advocacy activities. The seeds of IL have been sown in Malaysia. We have to continue nurturing it. The beginning may be difficult. The first few baby steps are always challenging. We believe that by putting our hearts into it we can slowly bring about changes our lives through IL. We have taken the first step in a journey of one thousand miles.

REFERENCE

Department of Social Welfare Malaysia.
Website: http://www.jkm.gov.my/

Department of Statistics Malaysia.
Website: http://www.statistics.gov.my/

Nakanishi, Shoji (1997) Historical Perspective and Development of Independent Living Movement in Japan. Human Care Association.
Website: http://www.dinf.ne.jp/doc/english/resource/z00009/z0000909.htm

Nakanishi, Yukiko (1999) IL Movement Spreads in Asia. Disability International; Asia-Pacific Region, Vol.11, No. 2 1999.
Website: http://www.independentliving.org/docs1/dpidi299.html

National Council on Independent Living.
website: http://www.ncil.org/

Tan, Peter (2005, 2006 & 2007) The Digital Awakening.
Website: http://www.petertan.com/blog/category/disability-issues/independent-living/

Note: This paper was presented at the 7th Disabled Peoples’ International World Assembly in Korea on September 6, 2007.

Yesterday, evening, I had a meeting with two of my mentors in Bangsar. We discussed, threw ideas around, cleared doubts and in the end, we agreed to work on the one project that has been dragging on since 2005. I am glad we had that meeting. In that two hours we managed to set the stage to take the first step in realising one of our few common dreams. Here’s to the success of our endeavour!

My plane ticket and that of my personal assistant was delivered to me this afternoon. Looks like it is all systems go for my trip to attend the 7th Disabled People’ International World Assembly in Seoul, South Korea although the organisers have not responded to some of my queries. My hotel booking has not been confirmed yet. Likewise, there is no indication of airport transfer arrangements upon arrival. I will be following up with the organisers on this in the following days. This World Assembly will be held at KINTEX from September 5 - 8.

My plane ticket was sponsored by a benefactor who prefers to remain anonymous while that of my personal assistant will be paid for by the Disabled Peoples’ International World Assembly Korean Organising Committee and the Independent Living Global Summit. I was also informed that my registration fee and accommodation will be covered as well.

Additionally, Associate Professor Tang Hang Wu has generously sponsored my personal assistant’s registration fee and other expenses not covered by the organisers. This has saved me a lot of work looking for sponsors to fund my participation and allowed me to spend more time working on the manuscript and presentation. Thanks Prof.

The title of my presentation is “Independent Living Movement in Malaysia.” Apart from speaking at the World Assembly, I will be attending other meetings on the sidelines of the conference, namely the Asia Pacific Network on Independent Living Centres (APNIL) Meeting and the Independent Living Global Summit. I foresee that it will be a busy four days in Seoul. Hopefully, the food and hectic schedule will not be too taxing on my health.